First; a bit of back story
I was born a month premature on November 4th of 1983. That’s when it all started. Due to unforeseen complications I was immediately rushed to surgery due to a perforation in my small intestine. I had to have a section of it removed, my appendix removed, and go through a colostomy and then the reversal. Part of my small intestine that was completely removed was my ileum. For those that don’t know, the ileum is at the end of the small intestine that absorbs nutrients including the essential B-12. Due to this, I am unable to properly retain most or any of the nutritional benefits of food which explains my inability to gain or keep weight on.
As this happened when I was first born it was never anything I had to ‘get used to’, I was just used to dealing with pain, nausea, fun bathroom issues, among other things. A few times I suffered from a dilated loop of the intestines which can sometimes reverse on its own and sometimes require surgery to fix. Luckily for most of my childhood/teenage years I suffered with the pain and all but was able to continue on without surgery. Through it all I had seen doctors multiple times, been diagnosed with IBS along with the previous ailments, however I was not put on any supplemental vitamins or medication other than taking a fiber drink every once and awhile, so during those stages in my life I never was fully processing the nutrients that a body needs.
Six years ago that changed. My symptoms had started getting worse. The pain was at times unbearable leaving me curled up in a ball in tears. I was sent to a hospital once even though I didn’t have insurance. The hospital took an X-Ray, pumped me full of morphine, and sent me on my way two days later with no real explanation of what happened or any prescription for the continual pain I was. What they did send me home with was a bill for $10,000. The most expensive hotel bill ever. So to those who say that you aren’t treated differently if you don’t have insurance, I can attest to the fact that you don’t have any idea you are talking about.
A few months passed and it wasn’t getting any better. Fortunately by this time I was able to get insurance and get to a doctor for another round of Upper GI x-rays and a colonoscopy. The colonoscopy did not reveal anything, but the Upper GI. I was diagnosed with diverticulitis, which are pockets of growth that form in the intestine. They can cause pain, bacterial infections, and can lead to perforations in the bowel. When my wife and I saw the X-Rays we were shocked to see that the one inside me had grown to about the size of a baseball off of my small intestine. I was referred for surgery to have another intestinal resection.
The surgery went off well. They were able to remove the diverticulitis and do a resection on the small intestine. Within a few days I was up and eating again. A bit of residual pain from the surgery, but other than that, I felt alright. Unfortunately, that did not last as long as I would have hoped.
After being discharged from the hospital and returning home, it wasn’t long until I knew something was wrong. I was unable to keep anything down. Then even when I wasn’t eating, I would still vomit, which was a dark green color, which to me didn’t seem to be a good sign. Then I noticed that my stomach had started to extend to a much larger size than normal. After that came the pain. Now, due to the fact that I’ve dealt with pain all my life, I am able to withstand quite a lot of it. Not this time. Have you ever heard or read a description that goes ‘The pain was brilliant’? That’s how I would describe this pain. Brilliant to the point that the pain itself felt like a sentient figure, something that knew, and was alive. I recall a moment of terror, laying on my couch with a cold wet washcloth over my forehead, feeling like my body was letting go and seeing nothing but an overpowering whiteness take me over. We called the doctors to which they first responded that it was possibly the medication and they would change it. That wasn’t it.
Finally after a few days of this, I had to tell my wife one of the hardest things I’ve had to tell her. I asked her to take me back to the hospital. I felt so depressed and guilty to have to leave her once again but I knew if I didn’t go in, I was going to die. Which turned out to be much truer than I could have imagined.
As it turned out, for some reason my intestine had gotten another dilated loop in it and due to the time we had spent at home, another long section of my small intestine had stopped working and had literally died and started to rot inside me. The one point of luck was that it had not yet perforated, though was almost a pinpoint away from it. The solution was another surgery to remove this section that had died, leaving me with just a shade above of not being permanently fixed with a colostomy bag. As if this wasn’t a bad enough situation, the best was yet to come.
I woke up in the hospital in the middle of the night, completely drenched in sweat. I walked into the bathroom, turned on the light, and noticed the growing spot of blood on my hospital gown. After running tests, they were able to determine that I had gotten an infection in the surgical site. They started pumping me full of antibiotics through my PIC line but a decision was made that a more, how should I say this, extensive measure, needed to be taken. The next afternoon a doctor came in to the room and explained that the best way to speed up the healing of this infection would be to open the wound and let it heal from the inside out. I figured this would be accomplished using a local anesthetic, which I was also wrong about. Now the incision from my new surgery ran from above my belly button down to my groin, and was affixed with staples. The vision of this procedure still haunts me sometimes. They had me lay back, hold on to the railings, and grit my teeth, as they removed the staples and pulled the wound open. This was yet another pain that I can’t really explain well in words. Just know that it does not feel good at all.
After that was done I was fixed with a wound vac and after a few more weeks I was able to be sent home. I will never forget the feeling of leaving the hospital after over a month of my stay. The day was bright and warm, and the instant I got into the car to go home, I burst into tears. I wasn’t sad, but it was like the most profound relief I had ever experienced. To feel for the first time since I went back in that I was going to live. I cried a lot in the following days, even to the point where a commercial for the live action version of ‘Charlotte’s Web’ made weep like a baby for some reason. I had learned from the nurses how to clean and pack the open wound in my stomach which was grotesque at the time. I am a person who likes to be in control of himself, and I do not like relying on others for things of this nature.
During my stay in the hospital because I could not digest food, I was put on an IV for nutrients. I’m a skinny guy to begin with due to these things, weighing normally about 125-130 tops. Without eating for the weeks that I didn’t have food by mouth, I had dropped around 20 pounds. I would go and look in the mirror sometimes and see how exposed m ribs and spine were due to the weight loss. I knew I had a long road ahead but these were the first steps. I had a wife I loved and wanted to be there for, and I had been given yet another chance to be alive, for that I was grateful.
Fast forward to today- six years later.
For the past six years, I have not had the easiest time. There usually isn’t a day that goes by that I don’t experience some pain or other issues. I dread going to sleep every night because I know the first thing that happens in the morning. I wake up in a lot of pain, I feel like I’m going to throw up, and I’m either constipated or the other way. Some days the pain tapers off after the morning. Other days it persists and gets worse throughout the day, to the point where I can barely breathe or walk. Instead of a pain that comes and goes, on the Bad Days, it is a constant, it doesn’t let up at all, and there is nothing I can do to make it go away. I just ride it out like it is a long wave and I’m waiting for it to crash on the shore. Most days like that end with me just passing out from exhaustion and hoping that the next morning it won’t be so bad.
I am fortunate enough to have a support system in my family who has helped me get through. But I will admit there are days were it is very hard. What they don’t tell you about is the depression, stress, and guilt that comes along with living with an illness like this day in and day out. Some days, I get so depressed by living this way. I’m not yet 30 and I’m terrified of living this way for the rest of my life. I feel guilt on the days I can’t do much that I am holding my family back. And the stress of knowing that just by laying down it will cause me another morning of pain makes for more depression. Sometimes I feel all of these emotions at once. I feel like people don’t understand exactly what I’m going through.
The worst part about having a severe issue like this is trying to convey it to others. If I had a broken arm, people would understand because it is an affliction they can physically see. It is impossible to tell someone exactly how much pain you are in when it is going on inside of you. You think sometimes ‘if I could only make them understand then they will see’, but we can’t do that. And sometimes just because we look fine on the outside does not mean that we are ok. Those of us who live with chronic pain like this are able to mask it, because it is what you have to do.
Over the past years, I’ve gone to the doctors and they haven’t been able to determine what caused this to continue on, and their solutions have been thus far to get me hooked on painkillers which I refuse to do. What they have not told me about is any supplements for what my body does not process. After doing independent research on others with this issue, I’ve been able to determine that I most likely suffer from SBS which stands for Short Bowel Syndrome, which effects people who have lost most or all of their bowel and the symptoms are all of what I have. By reading up I was first made aware of the fact that I am severely missing out on the nutrients my body needs. So as of lately I have turned to vitamins and herbal supplements. They do help. I still deal with pain but when I take them I feel better than what normal is to me.
Now, the last thing I want anyone to think is that I am looking for pity. I am not. I am lucky, because I have a beautiful family, and even though some days are harder, I appreciate and am happy with all the gifts I have in my life. I always try to remind myself when I get really depressed that no matter how bad it gets, there is someone else out there who has it much worse off than me, and I should be thankful just to be alive still. I simply want to bring attention to this issue as it is not talked about or understood. There is no special day for people with this; there are no ribbons or bracelets. But for those of us who live with it we need to discuss it. To let others know what we go through to perhaps help them understand. And we need to have hope. Even in the darkest days. To never give up, no matter what, because even though it can be hard, life is truly beautiful, and there is so much joy to be found in it, even if we do suffer. My family gives me hope. I continue to wake up each morning. I live on.
For a bit of levity after that slog I’ll leave you with a few common phrases or things I’ve heard many times throughout my life:
‘Man, you are so skinny. You need to eat more!’ or ‘Oh, you are so skinny, you don’t have to worry’ or ‘I wish I was that skinny’
I eat a lot of food. I just don’t properly digest it. I’m missing almost all of my short intestine and that is how I keep this girlish figure of mine.
‘Are you sure this isn’t just in your head?’
Yeah the crippling pain and sight of me clutching my belly and struggling to talk is actually me performing in an invisible play.
‘So, do you like, poop a lot?’
Sometimes it is like a barren desert, sometimes like the elevator scene in ‘The Shining’. For those asking this, do you want me to actually go into detail about this question people?
‘I had the stomach flu, so I know what you are going through’
No. No you don’t.